Remission

Journal Entry 8/2/23

I am in remission. Officially. Was told by two different doctors that I can say the word remission and mean it. It feels like it’s not real, but it is. 

Cancer has changed me in so many ways, I don’t think I can even describe the scope of it. but I’ll try to tell you some of the things.

There are some obvious changes. 

If you look at my belly you will see a foot long scar (pubes to boobs). It’s healing nicely and I have unexpected impulses to show it to people.

I am still bald, but my hair will grow back. I’m almost tempted to keep it shaved. It’s my cancer card. My excuse for having groceries delivered (the delivery drivers don’t seem nearly as judge-y when you answer the door with a bald head). 

Inside of me there are a whole bunch of parts missing. Thankfully, I don’t seem to miss them at all. Although their absence creates some menopause like discomforts, like hot flashes and heart racing and vaginal dryness, but we don’t need to talk about that. 

I think I escaped most of the neuropathy, but I do have some tingles in a couple of fingers on my right hand sometimes. 

Less obviously is the tiredness that comes from the treatments. They say that recovery time is 2 months per 1 month of treatment, so I should be back to something like normal in about a year. Although because I’m on a maintenance drug that may take longer. In lessons and socializing with friends, I seem to have enough energy to act “normal”, but then I definitely need a nap that afternoon, or the next day. 

My brain doesn’t work as fast as it once did. And I sometimes get words mixed up as they are coming out of my mouth. It could be amusing, I guess, but mostly it’s just a little frustrating and I have to slow down and reset and have compassion for myself and speak slower. 

My spirit is struggling to make sense of the cancer still, but more than that, I’m examining my life and the way I spend my time. The things that I want to do with the time I’ve got left.

Because cancer reminds you, that you will die. Hopefully I’ll still get to be an old lady with long white hair, but I don’t know that for sure anymore. 

And so, I rest. I play. I love. I write. And I try to create more music, because my voice is most easily expressed in music.  

Kate, wearing glasses and a black beanie, leans back in a chair by the fire pit in a friends back yard.

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KlangFest

Hello Everyone, 

LAST CHEMO! For real this time! We’re sitting here at UCLA and I waited until the blood work came back and they will start it shortly. 

There’s a tradition amongst chemotherapy patients that they get to ring a bell at the end of the chemo treatments! I’ll be ringing that bell this afternoon! 

Ring a bell for me this afternoon if you want! Or just think of me around 3:00…

FROM MY DEAR FRIEND LAUREL

On Friday, June 30 at  4 P.M. MDT (3 P.M. PDT), I invite all the Friends of Kate (FOK!) to Klangfest. To celebrate Kate’s last chemo (hopefully), all of us FOKs, wherever we are, will be ringing bells, chimes, cymbals, banging on pots and pans, etc. Let’s make a joyful noise together!! FOK, forever!

Thanks for joining together in celebration, 

Laurel Yost (FOK)

If you’d like to send me video or audio of your personal noise making, I’d love to see/hear it later! 

Ringing the Bell! 

Love,

Kate

Thanks to all KlangFest participants!
Videos and Pictures: Laurel Yost, Kathy Wietlispach, Bridget Barrett, Christian Knudsen, Anna Kohler and Georgie, and Lee Kohler

Responders with more private Klanging: Rob Kohler, Marjorie Kohler, Ken Kohler, Maria Kohler, David Illions, Judy Herr, Suzanne Lunak, Carol Lord, Lois Knudsen, Bob and Jean Peterson, Maja and Nealon Jeffers, Lynn Knudsen, Marianna Curry, Tove and Frank Hoch, Kim Alley , Michael Sieverts, Denis Buckle, and Ian Le Cheminant
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Last Chemo… NOT

Update 6/23/23: Yeah, so every chemotherapy begins with blood work that measures a bunch of things, and today was no different. Except for the fact that my immune system had not recovered as much as they want it to recover between chemo infusions. So close! But just far enough that they sent me home and I will go back next Friday, which, if all goes well, will be my actual LAST CHEMO!

Tomorrow (6/23/23) is my last chemotherapy session. I will go to UCLA Oncology center and get infused with toxic chemicals (cancer killers) one last time! I’m excited to be done with this part. So, in that way I’m excited to go to my last session tomorrow. In other ways, I’m not excited. Chemo is like volunteering for the flu for a week. It will be fine. It will be just like the others before it and it will take me a week to feel better and another 2 weeks to have my immune system in good shape. And after that, I will be able to return to normal… whatever normal is these days…

In 3 to 4 weeks I will start a maintenance drug called Nariparib (Zejula). It is a relatively new drug that is classified as a PARP inhibitor. Look it up if you’re interested in the science… Basically it inhibits cancer cells and causes them to die. Hopefully this drug will keep me cancer free for a very long time. I will be taking this drug for 2 to 3 years. I can’t say I’m excited to be on a cancer drug, but I am excited to be alive and to stay alive!

I don’t know when I’ll feel like going back to some of my things, like chorus and in person lessons and traveling, but I think this summer will be a time of transition for all of these things. I’m sure looking forward to seeing some folks that I haven’t seen in a long time!

Oh, and I am excited to wish you all a Happy Pride Month!

Chemo Swag: Rainbow Bracelet, Rainbow Apple Watch Face and band, Ovarian Cancer Bracelet, Another Ovarian Cancer Bracelet, and two Morse Code Bracelets (Ask me what they mean if you want to know…)
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